Roller coaster Christmas

Posted by Erin Wilson On Wednesday, November 25, 2009 0 comments
We've sort of had an up and down weekend, but the last two days have been great. As you know we are very hopeful that we will be able to be home for Christmas and so days that don't look like they are headed in the direction of home are tough on me. I've expressed before that being hopeful and optimistic has gotten us through a lot of this but when things don't pan out the way you want optimism sets you up for a big let down. I can't help but be hopeful to be home as a family for Christmas. This is the first time in our 6 months that going home is even in our future and who wouldn't want to spend Christmas under one roof in your own house. On Saturday, Josiah had a bad day with a very low temperature and distended belly, his feeds were stopped and cultures were taken. A rare respiratory bug, from Korea, I'm told, has developed in his lungs. Apparently, it's not something to be concerned about because Josiah hasn't been started on antibiotics. But seriously, Korea! So, on Saturday I get super bummed and feel like there is no way we are going home by Christmas, why am I getting my hopes up, I wonder? Then Sunday rolls around and Josiah has a great day. Very alert, tolerating his feeds well, temperature is good. So on Sunday, I think maybe just maybe we will go home for Christmas. Then Monday comes and it's another bad day with fevers, more cultures, blood in the stool, and stopping feeds again. So down I go on the road to pity party where we don't go home for Christmas. Now Tuesday and Wednesday have been wonderful and Christmas might just be on again! On Monday, with Milo not here, tough days with the girls not wanting me to leave to go to the hospital, I felt for the first time in 6 months that I just couldn't take much more. I just want to go home. Now that Milo's back and Josiah has had two good days in a row life is better.

It has also been a rough couple of weeks here in the PCICU which hasn't helped me deal with my emotions. There have been two older boys here for the past couple of weeks and they are pretty sick. So far when older children have come through here they are in and out of here quickly because they are so much bigger they heal faster. This has always been encouraging to me. It has made me feel like no matter how often we have to come in and out of here it's only going to get easier with shorter stays. But these past couple of weeks have reminded me of the other option. One of the boys, who is maybe 8 and has HLHS, came in really sick and ended up being put on the heart transplant list while being on ECMO (a complete life support system). Amazingly, he received his new heart today but has a long road to recovery still. It is difficult to watch these older children going through this and wondering what the fate of your child will be. I just want to beg God for a glimpse of our future but I know ultimately that it is not the future that matters. It is what we have right here and right now and what we have are 3 beautiful children and an amazing Creator who gave us these most precious gifts. We will continue to love and cherish each one of them as we love the One who gave them to us. We have so much to be thankful for this year. I'm hoping to find the time to put the many things we are grateful for into words tomorrow. In the mean time Happy Thanksgiving! Enjoy what God has blessed you with.

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